Living with traumatic brain injury: views of survivors and family members

peer-reviewedAim: This study is principally focused on the experiences of survivors of Traumatic Brain Injury (TB1) in Ireland and family members. Literature: The literature draws mainly from the discIpline of sociology and the following sub-disciplines: the sociology of health and illness, the sociology of organisations, disability, illness narratives and family theory. Conceptual Framework: The ovcrarching analytical framework utilises and builds on the traditional biomedical model of TB1, acknowledging that the biomedical model has much to infonn with regard to TB1. However, this study examined the wider implications of TB1 on individuals, families. health professionals, government and society. Therefore, an holistic model is appropriate to supplement the traditional approach. This was found to be useful for considering TBI in the Irish context and allowed for the inclusion of social aspects of interest. Methods: This research utilised a mixed methods approach. A retrospective study which involved a quantitative data gathering exercise resulted in the development of substantial dala sets of admissions to the only two specialised neurosurgical units in Ireland: these were Beaumont Hospital, Dublin and Cork University Hospital. Qualitative interviews with survivors and family members were conducted. The purposive sample selection of survivors and family members was drawn from the hospital datasets referred to above. Findings: Key findings focus on the considerable adjustment necessary for many of the survivors of TBI. The chaos that entered people's lives, the shift from independence to dependence, the loss of friends, jobs and previous routines influenced their experience of recovery. Lack of public awareness regarding brain injury and the reaction of others to disability had a profound effect on how survivors managed everyday encounters and social interactions. Survivors reported being 'written off by health and social care providers. However, survivors in this study had definite goals and aspirations and many stated they felt ' lucky to be alive'. The theme 'lucky to be alive' and the perspectives of survivors offer an alternative argument 10 the often widely held societal belief that the survivor 'would be belter off dead' than brain damaged and disabled for life. Key findings from family members of TBl survivors focus on the adaptation required. Parents not being able to retire and spouses having to become 'breadwinners', as well as carers, are unexpected changes. Family encounters with healthcare providers were sometimes problematic. Some participants reported being told to remove their loved ones from acute hospitals because they were 'bed-blocking'. Family members and TBI survivors shared the view thaI rehabilitation and post-rehabilitation supports and services in Ireland remain fragmented and poorly resourced. Key conclusions are drawn from the research findings and recommendations developed to improve rccovery processes and quality of life for TBI survivors and their families